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Tuesday, March 13, 2012

When Special Needs Looks "Normal"

Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs

This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.
There are lots of ways that special needs can be difficult to see with the eyes. When a child uses a wheelchair or has another obvious physical indicator of a "disability," it's easier for us to know that they might need special concessions (or maybe not). At the very least, it clues us in to the fact that we should take extra care with our language and also try to be helpful to them and their parents in whatever ways we can.

You may see a kid who's having a great time
and being silly; I see a kid who's overstimulated
and needing to chew to keep himself calm.

My son Daniel has Sensory Processing Disorder (SPD). It's a neurological condition that affects the way his brain interprets input from his senses (sight, hearing, touch, taste, smell, vestibular (balance), proprioception, and interoception). Daniel looks, talks, and often even behaves like any other neurotypical child, and he is even advanced in several areas of development (like fine motor skills and language). However, the way he experiences the world isn't the same as other kids. He experiences a "fight, flight, or freeze" response in his body (and he may even experience pain, though we don't know) when certain things happen which other children would take in stride. The intense sensations that Daniel experiences can trigger a sensory meltdown, which is no fun for anyone, let me tell you!

Just a few examples of things that are difficult for Daniel:

He has trouble walking on uneven surfaces and passing from one type of surface to another (like from pavement to grass) because he doesn't feel steady and he's unsure of what to expect based on how the surfaces look in comparison to each other. He intentionally steps over cracks in pavement.

He is overly responsive to loud noises and to certain frequencies of sound. He has recently learned the word "loud," which he's using to describe any sounds that feel uncomfortable to him.

He has difficulty with discrimination, being able to locate sensations in his body when they happen (he might bump his head and then just look confused, not knowing where the sensation is coming from).

He has trouble with locating sounds when he cannot see the source clearly. For instance, if his back is turned to me and I walk away from him to where he can't see me and then call his name, he is unable to walk toward my voice and he becomes frightened. He also is frightened by stuffed animals that play music and when people talk while hiding their mouths with their hands.

He has a lot of trouble with emotional regulation and self-soothing in general, as well as with maintaining normal elimination and sleep patterns when faced with unfamiliar situations.

As you can see, the things that are troublesome for Daniel are very specific and nuanced, and no two kids with SPD have the same set of challenges or triggers. This is why I believe it can be hard to recognize and understand for people who aren't experiencing it every day.

Choose Your Words Carefully

I've written many times before that I believe that the language we use to talk about things says a lot about the way we actually feel about those things. For this reason, I believe it's very important to be careful with the ways we use language, and to be mindful of how our words may be affecting the people we're saying them to.

One of the ways I've felt disregarded during my experience parenting Daniel is through others' use of dismissive language. When I describe the difficulties we're having at home, and explain his sensory symptoms, I'm often met with (obviously well-meaning, but) dismissive replies, such as:

"But he's so good!"
"He's so happy!"
"He's so well-behaved!"
"He's such a little darling!"
"Are you sure we're talking about the same kid, here?"

It's hard to hear the cashier at the grocery store, for instance, say these things because I feel like I
just have to grit my teeth and chuckle, or thank them, since it's difficult to concisely explain to people what's going on in the moment. I find it frustrating to receive these kinds of comments from strangers when I know
that once I get in the car (or home, or whatever), Daniel is going to have
a meltdown from enduring all the stimulation at the grocery store. What
I really want to say in the moment (which is the whole truth) is that there will be consequences from this trip to the grocery store.

It's also hard with extended family and friends because everyone just wants our lives to be easy and happy all the time, so they seem eager to find an explanation that will lessen the impact of the experience we're having:

"It's a phase; he'll grow out of it."
"It's his personality; my son was just like that, and he turned out just fine!"

This was a day I varied from our routine:
running an errand before nap time.
Daniel didn't nap at all that day.

The fact is, they usually only see him when he's holding it together. Because of the way Daniel deals with his sensory symptoms (with delayed reactions to negative events) he acts like he's fine
around people he's not totally comfortable with (read: everyone who doesn't always live with him) and then he completely melts down at night when he's not around them
anymore. He also has meltdowns more often and is more dysregulated than usual for several weeks after we have someone visit. This happened
most recently when my sister came to visit: Daniel's sleep was very
disrupted after her visit, he began having night terrors, and he's just
now getting back to his normal nap and sleep schedule.

It's by far the hardest to stomach when medical professionals use dismissive language with us about Daniel's sensory symptoms because they're supposed to be the "experts," and I'm paying them to give me comprehensive advice and help. It can be extremely difficult to hear that they don't believe us, or (worst of all!) that they think his troubles are our fault.

Here are just a few of the gems I've gotten from various medical professionals:

"Your stress is stressing him out, which is making him cry all the time."
"Hire a nanny—you clearly both need a break from each other."
"Why haven't you done Ferber yet? Babies can't learn good sleep habits if you don't let them cry a little first."
"It's just colic."
"It's probably reflux."
And, my personal favorite, "I've never heard of a kid having a delayed response to a triggering event."

There clearly needs to be more education about SPD and sensory symptoms in the medical community, not only so doctors can be more sensitive to parents who are going through this, but so that they can make the appropriate referrals (to an OT and/or Developmental Pediatrician who specializes in SPD) so the child can get help as early on in their development as possible.

What are some alternatives?

I've come up with a few tips for families, friends, and even strangers, for how to best interact with families dealing with SPD. Maybe these things won't work for every family of a kiddo with SPD, but I think they're pretty universal, and most of them can be used to help relate to all families with children (regardless of whether the kids are neurotypical or not).

Don't make assumptions. I know—it's incredibly difficult, but there are lots of things you don't know about a person (even a child) simply by looking at him: his race, gender, sexual orientation, religion, and in my son's case, whether or not his brain works like most peoples' do.

Take what the child's parents say at face value. They know this child better than anyone else, so try your best not to be dismissive of their feelings or their experience with your words or actions.

Don't take the child's behavior at face value. If there's one thing I've
heard over and over from other parents of kiddos with SPD, it's that
their child's sensory symptoms are often mistaken for other things. The
parents get judged by strangers for not being strict/effective
disciplinarians when their child is having a sensory meltdown in public. In Daniel's case, his outward appearance around unfamiliar people projects
happiness and enjoyment of the situation. As his parents, Jaymz and I
can tell when Daniel is holding back his real feelings about a situation
and saving them up for a big meltdown later (when he is at home, alone,
with "safe" people: us.)

Validate the child's feelings when he is having a meltdown. Being
dismissive of their experience of the world just makes it harder for
them to navigate through the hostile environments of everyday life. If the
child needs to wash his hands every time he gets them dirty, that's OK.
Don't tell him he's OK; let him indicate to you how he is feeling. (Even if you think he's having a disproportionate reaction to what's happening to him, it's your job to acknowledge that and ease him through it, not to be dismissive or judgmental.)

If you are close to a family with a child who has SPD, put in the effort to understand the way that the child's special needs affect the family's day-to-day life, and how you can make anything easier for them by something that you can do (or not do) to help them.

Just because the child seems to be having a positive reaction to things you're doing with him, doesn't necessarily mean that he's enjoying what's going on and/or that it's beneficial for him. Check in with the parents a lot to make sure what you're doing isn't harmful to him in any way. Try to get some direction from them about how you can best interact with that child in ways that won't disrupt their lives as much. (For example: Oftentimes, children with SPD will engage in self-stimulation behaviors which are not actually therapeutically beneficial to them. Though they may crave these types of stimulation, they are not good for their brains, and there are alternative activities that can be better in those instances) Spinning and swinging are two examples of (the many) activities you should check in with the parents about before doing with a child who has sensory issues.

Be sensitive to the family's daily routines. Structured days with lots of routines help kids with SPD to predict what is going to happen next during the day. It helps them to feel in control and know what to expect, when a lot of their experiences are so intense and out of control. Families with kids with SPD may have certain times of day that are better than others for varying from the routine (say, to have a visit with you!) without causing as much disruption.

Be engaged.Be willing to learn more. Ask questions. Be curious. Show interest in the parents' experience, but please don't pity. Take caution before giving advice.

Please take time to read the submissions by the other carnival participants:(This list will be live and updated by afternoon March 13 with all the carnival links.)

Parenting A Child With Neutropenia — Jennifer at Hybrid Rasta Mama discusses the challenge of parenting a young child who cannot produce enough neutrophils to fight off bacterial infections.

How I Love My High Need Baby — Shannon at GrowingSlower was shocked to find she is parenting a high-needs baby, but she's surviving thanks to attachment parenting.

We're a Lot Like You — kaidera at Our Little Acorn talks about how her family is similar to others, even with all their special needs

The Emotional Components of Bonding with Preemies — Having a premature baby can bring on many unexpected emotions for parents, but working through those emotions can bring about a wonderful bonding experience. Adrienne at Natural Parents Network shares.

Parenting the Perfectionist Child — Mandy at Living Peacefully with Children discusses that as parents of gifted children, we are in the unique position to help them develop the positive aspects of their perfectionism.

Accommodating Others' Food Allergies — Ever wonder how to handle another family's food allergies or whether you should just skip the play date altogether? At Code Name: Mama, Dionna's friend Kellie (whose family has a host of allergies) shares how grateful she is when friends welcome them, as well as a list of easy snacks you can consider.

Only make promises you can keep — Growing up the child of a parent with a chronic illness left a lasting impact on Laura of A Pug in the Kitchen and what she is willing to promise for the future.

A Mom and Her Son — Jen at Our Muddy Boots was fortunate to work with a wonderful family for several summers, seeing the mother of this autistic son be his advocate, but not in the ways she thought.

When Special Needs Looks "Normal" — Amy at Anktangle writes about her experience with mothering a son who has Sensory Processing Disorder. She offers some tips (for strangers, friends, and loved ones) on how to best support a family dealing with this particular neurological challenge.

22 comments:

I LOVE LOVE LOVE this!! My daughter also has SPD and it's so hard. Many close friends and even family seriously think it's a made up diagnosis, an excuse to charge money for therapies and explain away typical childhood behaviors. They tell me things like "all kids act like that" or "I was like that, does that mean everyone has SOD". They just don't "get" it. I have even gotten the "but she looks so normal" comments a few times :( How is she "supposed" to look? Or the "but she's so smart" because she is also advanced in a few areas, including language. I am going to start sharing this post whenever I get comments like that.

Great post!! I have many thoughts in response...I *cannot* believe some medical professionals have said some of things to you! Wow. I have SPD, but didn't know this until college. It has been an eye opening experience to me and helped me understand my students (when I taught elementary school) so much more. Also, I always kick myself when, in soothing Burkley when he cries, I say things like, "You're okay"- I know I shouldn't and don't want to say that, it just comes out! I'm working on that.

You're such a good mom to Daniel and it's apparent are very aware and present in meeting his needs.

Jaymz also has SPD symptoms, and I'm just so grateful for all we've learned (and continue to learn) throughout this process. It has been discouraging to have such negative comments from medical professionals, and sadly I hear similar things from the other parents in my sensory support group. It's a slow road, getting the word out, but I'm glad I can make a (tiny) difference through writing here. =)

This is a spot on perspective. With my brother having downs, and my young cousin experiencing by-polar from a very early age, I've heard a lot of heartless observations. We've learned to honestly say, "I believe that is true for you..." regardless of rationale, "normal", and any other obstacle. Thanks for the feedback.

This such a wonderful post! I have been lucky in our experiences (for the most part) with my middle son, but it is so hard to navigate a larger world with something like SPD (No, we won't be going to the fireworks show for the millionth time! Sheesh!). How great for Daniel to know that you are always in his corner.

This is so helpful and gives me more insight into how to support you and other families in your place. It's so tough to navigate special needs, and even harder when people are telling you you're imagining things. Gah. I find similar dismissiveness happens with Mikko, I guess just because people don't look very closely in general at how kids are responding to something; he'll be holding back tears and someone will think he's just making a funny face. Um, yeah. Or when people think it's ok to totally disrupt the kids' schedule because, hey, they're not picking up the pieces. And that's in kids without SPD, so I can only imagine the magnitude of frustration you go through!

I'm so glad you're open about what SPD is like for you and wiling to educate the rest of us. You and Jaymz are such sensitive parents who are doing so much for helping Daniel learn to cope with how overwhelming the world is for him. Thank goodness he has you!

Thank you so much for saying these things, Lauren. I know that many of the struggles we face with Daniel are more universal (like others not paying attention to his reactions or disregarding schedules, etc.) and that's part of why I thought this post would speak to parents of sensitive and high-needs kiddos everywhere, not just those who have SPD.

I appreciate your support, and that of everyone here, in meeting us where we are on this journey and receiving my thoughts and experiences at face value, with kindness and grace. Thank you.

Thank you for this post. I knew nothing at all about SPD. I think I tend (sometimes) to tiptoe around things I don't understand. On the one hand, I don't want to make hurtful assumptions because of my ignorance, but on the other hand, my tiptoeing probably isn't all that helpful to anyone. So this information is great to have.

Thank you for getting this out there for people to read. My daughter also has some SPD symptoms and we're in therapy for them. My daughter also has problems sleeping through the night & sometimes with her naps, but our therapist didn't mention it was possible that when her routine changes it causes those problems. So I'll look into that more.

Thank you for posting this. My son was just diagnosed last week and I'm still trying to process... a once casual reader is about to start sifting through all your posts looking to learn from your experience. I'm so grateful for this carnival!!!

Thank you so much for sharing this! I couldn't have said it better myself. We are almost five months into our family's journey with SPD and others perceptions (and comments) is one of the most frustrating parts of our experience.

Great advice! I find that since I've gotten involved (online) with the AP community, I'm much less judgmental when I see meltdowns or other behaviors in public. I tend to first accept that I have no idea what lead to this moment. (Not that I was "judgmental" before, but I think I better understand a lot of possible reasons now.)

Validation is always the best route in my opinion! I still remember times [as a child] when my fears were brushed off as nothing, especially from nightmares. "It was JUST a nightmare, go back to sleep." Yeah, not helpful.

I had just a tiny taste of some of this (people dismissing our experience) when Spencer wasn't sleeping. I felt like people assumed I was exaggerating or just telling me it would pass. He was literally only sleeping for 10-30 minutes at a time and I couldn't find a solution for a while. It turned out to be his thyroid and it has, thankfully, passed - thanks to treatment. I don't pretend to fully understand your situation, though, as this only went on for 2-3 months for us. It was a ROUGH time for me.

Thanks, Jorje! Sleep stuff can be so SO rough. I'm sorry you felt dismissed even a little bit while you were working through that very trying time. I feel like we could all use to be a little more understanding and trusting of other parents (that they know what they're doing). Thanks for the reminder to be more mindful about that myself, again.

Thanks, Jorje! Sleep stuff can be so SO rough. I'm sorry you felt dismissed even a little bit while you were working through that very trying time. I feel like we could all use to be a little more understanding and trusting of other parents (that they know what they're doing). Thanks for the reminder to be more mindful about that myself, again.